Will I Be Next?

A BATTLE FOR THE BRAIN THAT BEGINS WITH THE HEART

The Story

Will I Be Next? is about the quest to find a cure for Alzheimer’s disease as told by human research subjects in a long-term medical study.

This independent documentary intimately shows what happens when human test subjects – who are at high risk for developing Alzheimer’s disease – offer their blood, brains, and hearts to conquer it.

Since Dr. Mark Sager took the initiative in 2001, medical research scientists at the Wisconsin Alzheimer’s Institute at the University of Wisconsin have been on a mission – to figure out how to prevent, and eventually cure, Alzheimer’s disease.

Their method is to track the characteristics and habits of people at high risk for the disease, and to observe them in biological detail as they age. Some convert to Alzheimer’s disease and some do not. Why?

After humble beginnings, the study—the Wisconsin Registry for Alzheimer’s Prevention (WRAP) —is now recognized by the National Institutes of Health as a high-priority research site.

At the heart of the Alzheimer’s study are the test group participants – middle-aged adults with a deceased or living parent with Alzheimer’s disease. Parental history makes the test group 3x more likely to get the disease than those without a history of it in their families.

The human research subjects are followed by the scientists for a minimum of 15 to 20 years and undergo periodic and rigorous cognitive tests.

The test group also shares one of life’s most difficult trials – a parent’s decline from Alzheimer’s disease.

The Characters

Barb, Karen and Sigrid also return every two to three years to undergo the signature experience – a multidisciplinary oral cognitive test. This battery of questions looks for problems with their memory that signal their worst fear—the onset of Alzheimer’s disease.

By combining clinical, brain imaging, biomarker information and physical fitness data, scientists are in pursuit of both the causes of the disease and what lifestyle practices may help delay the onset. It’s a race against time, but thus far, Alzheimer’s has been the victor.

As the researchers compile data from 1,500 participants over the first period of the study, a narrative begins to emerge.

Film News

We are grateful. . . for the wonderful support we’ve received every step of the way from so many – our funders and contributors, partners who’ve provided feedback and a willingness to assist going forward, those who have “Joined the Quest” on our website and our Facebook and Twitter followers – it’s all of you who have made WIBN possible! – Therese for the courage and stick-to-itiveness of the people in the film! – Melissa for being able to join this exceptional team to make something truly special. – Shawndra for the strength and determination in the sometimes painful moments we feel within ourselves to push through for the greater good. – Amy for the support, encouragement, and financial contributions we have received and yet to come to complete the film. I feel this film will help caregivers cope with this disease. – Eileen for the Wisconsin Registry for Alzheimer’s Prevention–the dedicated scientists and committed human test subjects–who inspire the film team to bring the stories and advances in research to a broad audience. I’m also grateful for the chance to honor my Mother, turning the sadness of her experience into a purposeful volunteer effort. – Jo to be of service to this worthwhile project by bringing into play a hodge-podge skill set I’ve acquired over the years, and also the ability to learn a completely new industry! I am also thankful for the wonderful team I get to work with. – Jean THANK YOU to the Will I be Next? community! [Photo: Fall in Green Bay by Therese...

Keith Fargo, Director of Scientific Programs and Outreach for the Alzheimer’s Association and Kimberly Mueller, a researcher for the Wisconsin Alzheimer’s Institute were two keynote speakers at a community science and education event hosted by the Miami Valley Chapter of the Alzheimer’s Association in Dayton last week. A work-in-progress clip from Will I Be Next? kicked off the event by offering participants a glimpse into the world of Alzheimer’s disease research. Dr. Fargo, who manages the Alzheimer Association’s scientific publications including the Alzheimer’s disease Facts and Figures, brought the audience up to date on AD research. He summarized progress on several important studies, including the A4 study, which is being conducted at 67 sites across the county. Kimberly Mueller, MS, summarized key findings from the Wisconsin Registry for Alzheimer’s Prevention, including lifestyle factors that may be helpful in building resilience to the disease. Some of the factors she shared included the WRAP team’s research into controlling diabetes, and the impact of exercise, sleep, and socialization on resilience. Both speakers emphasized the importance of getting involved in clinical trials. Dr. Fargo, who leads the Alzheimer Association’s innovative TrialMatch® program, invited participants to fill out a card to learn more and possibly get matched up with a trial. Then a panel of research doctors from the Dayton and Cincinnati region spoke about their studies, challenges, and observations. The panelists were: Neurologist Dr. Lawrence Goldstick from the University of Cincinnati College of Medicine, Dr. Meenakshi Patel, Principal Investigator for Valley Medical Research in Centerville, Ohio, and Dr. Kenneth Pugar, President and Founder of Dayton Center for Neurological Disorders. All three are integral...

New from Will I Be Next – a short video to meet the film’s research scientists. Why do they do what they do? How does a team of people with diverse experiences, backgrounds, and ideas play to their strengths? How will they unravel the mystery of Alzheimer’s disease? Also, here’s a recent article from Healthline News about the necessity of human research subjects to research scientists. Without dedicated people in clinical trials and studies, scientists cannot do their work. The article features some of the subjects and scientists from the Wisconsin Alzheimer’s Disease Research Center who appear in Will I Be Next? –Melissa Godoy, Director...

Filmmakers

Therese Barry-Tanner

PRODUCER/SOUND

Therese Barry-Tanner has been a participant in the WRAP study for more than ten years. Therese understands Alzheimer’s disease at an intimate level. She assisted her father in caring for her mother with the disease. Later she advocated for her mother fiercely at a nursing home — her mother was unable to speak for herself. Therese lost her mother to Alzheimer’s disease in November of 2008. Will I Be Next? began as Therese’s idea in 2011. Therese hopes that Will I Be Next? will bring the audience through the emotional journey and difficult decisions that are made when a loved one lives with or dies from Alzheimer’s disease. The film, Therese hopes, will share the experience of being a human research subject, and that it will offer an inside look at the people who are working to find a cure. Therese has worked in the healthcare industry for over 25 years, with over 15 years in project management. She is currently a program leader for implementation of the Affordable Care Act.

Melissa Godoy

DIRECTOR/CINEMATOGRAPHER

Godoy was Line Producer for the Oscar-nominated documentary short, The Last Truck by Steven Bognar & Julia Reichert (HBO); and Line Producer for Bognar and Reichert’s Emmy Award-winning documentary about children with cancer, A Lion in the House (Independent Lens/PBS). She was the Cincinnati cinematographer for Election Day by Katy Chevigny (POV/PBS); a cinematographer for the short docs Making Morning Star and Sparkle (Lifecasters/PBS) both by Bognar & Reichert; and a shooter for Andrea Torrice’s Trees in Trouble: Saving America’s Urban Forests (PBS/NETA). Her documentary about creative aging, Do Not Go Gently, co-produced with Eileen Littig, is airing for the 8th consecutive year on PBS stations through American Public Television. The film received a National Media Award from the American Society of Aging. For the past seven years Godoy has been shooting Rebirth of Over-the-Rhine, a narrative documentary about change in Cincinnati’s historic core.

Eileen Littig

PRODUCER

Eileen Littig is an independent producer and the former director of Northeastern Wisconsin In-School Telecommunications. With Wisconsin Public Television, she has produced numerous television programs for children and teens, and has been recognized with a Corporation for Public Broadcasting Gold Medal and two Midwest Emmys. For 28 years, Littig produced Teen Connection, a series of live call-in programs on contemporary teen issues that aired on Wisconsin Public Television. Recent work, with Dean Leisgang at Educational Television Productions of Northeastern Wisconsin, includes a short doc for teens called If a Bully Watches This and the story of a pioneer female environmentalist, Emma Toft: One With Nature. Littig received an Athena Award (2007) and the Carol Montie Community Service Award by the Mediation Center of Greater Green Bay (2011) for her “extraordinary commitment and accomplishments in bringing out the voices of all people and in promoting dialogue and understanding.” She serves on the Wisconsin Educational Communications Board.

Shawndra Jones

SOUND/GRIP

Jones was a producer/shooter/editor and sound recordist for Reinvention Stories, a collaboration between the National Public Radio station in Yellow Springs, Ohio – WYSO 91.3, led by Neenah Ellis, and filmmakers Steven Bognar and Julia Reichert. In 2012, she was a sound mixer for the short docs Making Morning Star, which premiered at the 2016 Cleveland International Film Festival and Sparkle (Lifecasters/PBS), both by Bognar & Reichert. In 2015 she was on the location sound team for Contemporary Color, avisual and audio extravaganza by the Ross Brothers, which premiered at the Tribeca Film Festival. Jones was the Cincinnati sound engineer for The New Black by Yoruba Richen (Independent Lens/PBS). Jones is a graduate of Wright State University’s Motion Picture Program. She also works at WBDT and WDTN-TV in Dayton.

Amy Kruep

SOUND/GRIP

Amy Kruep, RNC, DCP has worked with the older adults for more than 30 years, particularly those with Alzheimer’s disease and related dementia. She is a nurse manager for Residential Care at Mercy Health West Park, a continuum care facility in Cincinnati, where she created the DaySTAE (Success Through Arts & Environment) dementia program. Kruep serves on the Alzheimer’s Association Greater Cincinnati Public Policy Committee, and she is a regional trainer for the national TimeSlips™ creative storytelling program. Kruep produced two short fiction films in collaboration with participants in her DaySTAE program: Runaway Train (2010) and Until Sadie Blotz (2012). Until Sadie Blotz is about an unhappy nursing home resident who returns to a day in her life. Created by writers and actors with dementia, it screened at the Positive Aging Conference in Los Angeles and the American Society on Aging in Chicago. Amy cared for her father through his last days with Alzheimer’s disease.

Jo Hillman

ASSOCIATE PRODUCER

Jo cared for her mom when she was diagnosed with Alzheimer’s disease. After her mother’s death in 2004, Jo became a human test subject in the WRAP study. A post-secondary educator, Jo’s career has taken her to private and public institutions across the U.S. and Canada. She has received awards of excellence for her teaching and quality enhancement initiatives. Jo was Vice President of the National Quality Academy, taking continuous quality improvement concepts to schools of higher education. She is the founding principal of Performance Horizons Consulting Group, which offers quality improvement strategies to post-secondary schools. Jo’s media productions include Connections, a customer service training program for higher education and Keeping the Green in Greenville, about urban forestry in a Wisconsin town.

Karen Y. Durgans

Community Engagement Consultant

Karen was Associate Producer and Outreach Coordinator for Steven Bognar and Julia Reichert’s A Lion in the House, an Emmy Award-winning documentary and national outreach project (Independent Lens/PBS). Durgans was a field researcher for the U.S. Financial Diaries Project, a research and development partnership between New York University Wagner’s Financial Access Initiative and the Center for Financial Services Innovation out of Chicago. She provided research, logistical and audio support for “American International Health Alliance: Partners in Health,” which profiled international sister-city partnerships in Armavir, Armenia and Galveston, Texas. “Partners in Health” aired in Season 10 of the award-winning PBS series, The Visionaries.

Jean Wentz

Production Assistant

Jean worked as an archives assistant at the University of Wisconsin-Green Bay library for 20 years before making a career change. She is now a caregiver for the elderly and those with disabilities, including Alzheimer’s disease and other dementias. Jean is also the administrative assistant for the Green Bay Area Unitarian Universalist Fellowship and Chair of the Sunday Services committee. She just received her certification as a mandala facilitator in the tradition of Dr. Rajita Sivananda (Judith Cornell), which involved 108 hours of leading workshops.

Partners

Center for Independent
Documentary

The Center for Independent Documentary (CID) collaborates with independent filmmakers to create documentaries on issues of contemporary social and cultural concern. CID is the fiscal sponsor of Will I Be Next? and manages the project funds through their 501(c)(3). They bring expertise in fundraising, production, and distribution. Recent CID projects include Nancy Kates’ Regarding Susan Sontag (HBO) and Cheryl Furjanic’s Back on Board: Greg Louganis. Founded in 1981, CID’s programs have screened at major festivals, aired nationally and locally on public and cable television, and earned numerous awards.

Alzheimer’s AssociationGREATER WISCONSIN CHAPTER

The Greater Wisconsin Chapter aided in securing initial funding for Will I Be Next?, which was instrumental to making the project a reality. It is one of over 70 Alzheimer’s Association chapters across the United States and shares the organization’s mission: “To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.”

Working Films

Working Films is leading the Will I Be Next? community engagement initiative. Working Films builds partnerships between documentary filmmakers, communities, and non-profit organizations and uses the power of story to inspire and transform. A recent campaign called Reel Aging positioned 11 distinctive media projects that challenge cultural perceptions of aging and delve into genuine needs of elders. Some of these films included The Genius of Marian by Banker White (POV) and Age of Champions by Christopher Rufo (PBS).

Will I Be Next is made possible with support from:

Extendicare Foundation
Helen Bader Foundation
Irene D. Kress

The Premonstratensian Fathers Augustine Stewardship Fund
Individuals honoring a loved one who died of AD